So I’ve been dreading this for a while.

Right after the first of the year (and surprisingly right after a 2.5 week break from work!), I started not feeling so great. I hadn’t been eating out much at all so I couldn’t blame it on gluten this time (though believe me, I tried!).

I told a few friends that I thought the Lyme may be creeping back up on me but I was going to have to work up the nerve to investigate it. Because I really don’t want it to be that – who would?!

My follow up with my thyroid doctor was today and I debated all week about whether I was even going to bring up all of my symptoms. Or share what I was thinking. It didn’t help that I actually did get glutened this past Monday at a work lunch where the staff swore up and down to me there wasn’t any risk if I only ordered a sandwich without the bread. Needless to say, that was wrong! I admittedly kept trying to convince myself it was just that making me feel bad and trying to ignore the fact that it didn’t all start this past Monday.

Anyway, I worked on developing a list of all of my symptoms that have come back (or worsened) since the beginning of January. Here’s the list I presented him today:

• Unexplained fatigue
• Back pain around shoulder blade area (as well as neck pain)
• Painful soles of feet
• Mixing up words, forgetting words, not remembering what I was saying mid-sentence
• Memory loss – asking same thing multiple times, for example
• Cold when everyone else is comfortable or warm
• Overreaction to events – either sadness or irritation
• Menstrual cycle changes (I’ll spare you the details!)
• Ringing in ears
• Daily headaches (usually starts in afternoon)
• Brain fog
• Craving salt
• And a few more I’m not comfortable sharing

I started trying to recall the list to him and got frustrated so I just handed him my phone (where I had it written down). He noted everything and then started going through my previous results. I told him it was really freaking me out because I was beginning to feel like I did when we were trying to get the Lyme diagnosis.

He told me he had been doing a lot of research into it recently and was reading about there beginning to be a little more acceptance into there being more strains of Lyme and other tick borne illnesses than anyone first realized. And that treatment wasn’t simple. Of course, there’s not widespread acceptance, he just said he was happy to see there at least seemed to be some acknowledgment beginning to happen.

He asked me if I was still strictly sticking to the gluten free diet and I replied that I was. He then asked me about dry eyes and I said they are often dry but nothing else is (mouth, nose, etc) and then I said but my mom does have Sjogren’s. And he laughed and said so you knew where I was going with that, huh? 🙂

He said he was going to reorder all of his standard testing – thyroid, adrenal, hormones, autoimmune markers, etc. And if all of that comes back normal, then we’re unfortunately going to have to “open the can of worms that neither of us wants to open”. And that can of worms is chronic Lyme.

I could have just started crying right there. In fact I was squeezing my hands as tight as I could to fight the urge to let the tears start falling.

While I’m so glad I have a doctor who really listens to me and doesn’t just blow me off based on all of these symptoms, I almost wanted him to just be like no this definitely isn’t Lyme again, it’s XYZ. Of course, I fully realize had he done that, I would have been mad and felt like he wasn’t listening to me and taking my symptoms seriously. So I guess there’s just no pleasing me!

I asked if he has other chronic Lyme patients and he said he has three or four he’s treating now and has been treating for a long time. He said he has one that has been on a fairly high dose of Doxycycline for a long time but any time he comes off, he relapses.

He said he just works with them and they’re all doing research about what the newest possibility for treatment may be. He said he’s very open to them coming in and saying hey, I found these articles – what do you think? And then they go from there.

So I guess we’ll see what these tests say. I did ask him to go ahead and just order the Western Blot. I know we can’t really even rely on the accuracy of it but I just really want to know what it’s going to show now.

Time will tell. But honestly, he didn’t seem much more optimistic than I am about not having to open up that can of worms.

In the meantime, I’m glad I’ve stuck pretty much to the same diet I had during treatment so at least I won’t have to make changes with that. I just need to prepare my stomach for the possibility of a ton of antibiotics again so we’re headed back to the store for more probiotics this weekend.

The Vitamin Shoppe is about to love me again!

I’ll post back when the results are in – my follow up is on March 10th.